Dazzle4Rare was established in July of 2016 with a simple goal of signal boosting rare and undiagnosed patient and community messages. Since that first August week long event, we have been working with allies, advocates, small and large non-profit organisations, and others who wish to elevate rare and undiagnosed voices.
Every August, we will be tweeting, posting, liking, and sharing for rare disease.
It’s projected that 1 in 10 American’s suffer from a rare disease [https://globalgenes.org/rare-diseases-facts-statistics/]. It’s also projected that there are at least six to seven thousand rare diseases. With between six and seven thousand rare diseases, it’s hard for any one rare disease group to spread awareness of their condition.
Now, more than ever, we have an opportunity to raise a greater awareness as a larger community. While each community has their own unique voice, concerns, and needs, by creating a larger community for one week a year, we can spread awareness together and for each other. The only barrier to doing this is the desire, not geography or funding – sharing is free.
If you would like to participate, it’s simple! You can like, share, and retweet any of the posts on our social media pages or those of our partners (see our Participants page for more information). We also encourage you to share information about rare disease, your own story, or educational links and information for everyone to learn more – all using the hashtag #Dazzle4Rare.
Tag your selfies. Tell your rare disease story. Raise awareness.